I’ve been known to bite off more than I can chew many times in my life. Don’t believe me? Well here are a few checked marked items for you:
I married young <long before we had a nest egg, still waiting on the nest egg!>
I started having children before we knew how we would support them <again, still working on this!>
I began my master’s program while in the midst of returning to teaching, after a 15 year hiatus <because I still needed to help my kids apply to colleges, be a manager for parts of their lives, and keep my marriage together>
I set off on this author journey.
This little sojourn over the last eighteen months has truly been an eye opener. What started out as an epic idea one morning in the shower, snowballed into something I’m proud to be a part of, but wow the learning curve truly whips my arse daily.
Again the things I’ve learned over the last 18 months:
Introduced to the genre for the first time by my MIL in June 2015. I’d never read romance before <The romance genre is broad, from mild sexy times to OMG jaw dropping>
Read over 400+ romance novels in order to understand the style, market, and reach
Began reviewing what I was reading because the nerd in me was tired of reading poor reviews of people who didn’t study the structure of the author and the far-reaching crafty moves made by these talented writers. <Yes, it’s true English literature people look at how an author uses things such as themes, motifs, juxtaposition, figurative language, even ethos, logos, and pathos at times to reach their audiences>
Met with a few local published author friends <all Little League friends who write YA novels>
Given advice on both traditional publishing versus indie <Pretty sure they shutter that I went indie rather than traditional at this point; I had to wear my own shoes>
Reached out to authors in the indie industry <nicest folks I’ve met and continue meeting>
Discovered awesome friendships and mentors <truly couldn’t be moving forward without their advice and support>
Settled into a writing rhythm <took negotiation with the family in order to finally take time to do what I needed to do>
Learned the transition from academic stuffy writing is a complete 180˚ from novel narrative writing long winded formality. Thanks to terrific editors!>
Discovered who I am in my 40’s < still in development as the nest is not empty yet>
With all of this said, I was introduced to the idea of NaNoWriMo back in July during a summer day job training. One of my colleagues caught wind I was in the mist of writing my first novel. She begged me to join NaNoWriMo just as a different avenue for keeping my writing on a roll. She set her goal to write a poem a day. I laughed at her, told her I wasn’t crazy, and thought nothing more about it until September rolled around. Several authors started throwing around NaNoWriMo challenges, and of course my competitive nature got the best of me.
Now, two days before November 1st, I sit plotting the new short novel I’ll be tackling over the month of November, while continuing the sequel to book one, and of course doing my day job. I continue asking myself, “What in the-ever-loving-heavens did I sign up for?” However, I am really excited to have come this far in 18 months. If you are interested in joining NaNoWriMo click on the link, sign up, give it a try. You never know maybe a writer lives inside you, ready to bust out, get started, and blossom into a beautiful new bud!
This little short film 2081 is based on Kurt Vonnegut’s work Harris Bergeron. Using this Sci-Fi dystopian gemstone makes students think about how they view the terms equality, freedom, rights, needs, desire, motivation, goal setting. Sometimes we talk about it in terms of “Should everyone earn the same grade?” or “Is the doom of failure a reason not to risk?” maybe even “What role does media play in our perceptions?”
We of course look at the literary aspects of suspense, horror, and how does Vonnegut’s craft create the tone and what provokes the mood in the reader. How does the director of the film help perpetuate Vonnegut’s message or theme of the work. How does he implore motifs and symbols. Additionally, I’ve asked students to draw conclusions about current events and, “Does 2081 have any themes which apply to modern-day issues?” This is always a fun little can of worms to open. This year it has proven to be quite the topic of choice.
While I know many grown and moan about how outdated education is, and why do we choose to read all the novels associated dead white men since they are ultimately boring? Here is what I do know from both teaching and writing:
Any work can be boring. Sometimes it is important to struggle through something and critique it for the items it lacks, since constructive criticism is an important piece to gaining future successes.
It is all about the delivery of the piece you are presenting and how you package the material.
Making connections with things that are familiar helps perpetuate a better understanding of why a particular work is used.
Explaining how the author crafted the work in order to convey and provoke certain attitudes or promote specific themes helps drive students to seek the depth rather than the surface of a work.
Examining the historical backgrounds of both the author and the time periods opens up a whole new perspective about most works.
I also believe, down to my core, we need to read novels of different genres, time periods, authors, and styles in order to provide a base for making our own writing better. We don’t improve without reading and absorbing stylistic moves from other people. We learned to speak because people repeated sounds, words, and oral structures to us until we began to mimic back, and then we created our one verbal responses over time. We did not learn to read without people showing us how each letter grouping formed a word, which related to the oral structures we’d been groomed to understand since birth. We learned to read fluently because our practice and vocabulary grew with our experiences and exposure. Then writing happened. This is the last in line for the literacies. It takes practice in mimicking works we’ve been exposed to over time. If we only expose ourselves to works such as Dr. Seuss works or Jeff Kinney’s Diary of a Wimpy Kid series then our ability is limited and our growth stifled. There is nothing wrong with these examples, but if we want to expand our minds, and open up our world, we must challenge ourselves with a variety of works. By nature we will gravitative to familiar and comfortable, but it is my job to expose students to the things which are out of their wheelhouse.
Now when you ask, “Why do you read about all the dead white men?”, you might just understand that I’m here to exercise the brain, expose it to things uncomfortable and foreign, develop questions which make connections, and challenge the mind to think past the surface, in order for you to become a better reader and writer in the future. What I am not doing is trying to make you miserable and reduce you to complaining about how education really is disconnected with today’s world. Maybe some educators are unplugged, but please don’t group me in those same molds! I understand the need to introduce the modern with the classic as well as the technology with the pen and paper. However, let us recognize the value in variety and celebrate the crafts of those who have written over the course of time including both the old and the new.
Suicide, the single word which most people hurry to brush underneath the carpet. People shy away from the uncomfortable issue surrounding a life lost at one’s own hands. People generalize about the loved one’s left behind, or the selfishness of the victim. Unfortunately, people forget that a life is always a life, a loved one is always loved, and sometimes unexplainable tragedies occur for which no answers can be found.
My first experience with suicide happened in 1985. A family friend, and employee of my father’s, decided his life no longer held the same value as it once had. He ventured off to a nearby mountain cabin, loaded his rifle, and pulled the trigger. His unsuspecting family filed a missing person report and within days received word. Our neighborhood was close, and his family was a part of all of our social functions. It rocked our community to its core. The worst part about the entire situation is nobody knew this man was in a free fall. Nobody knew he held inside so many dark demons. Nobody knew he intended to take his own life. He never let a soul know he needed help. His family in turn spent a few years picking themselves up and trying to move forward without the husband, father, or friend who ended everything without a sign.
Nine years ago my eldest boy entered the intermediate school arena. I was the ever volunteering parent. I quickly was thrown into the role of PTO President, because let’s face it, who really wants the job? However, it was one of the best decisions I made. It brought about friendships with the staff, and allowed me to spread my wings back into teaching. On this staff were a pair of brothers with a dry sense humor, and a deep commitment to student achievement. My children were fortunate enough to fly under their wings and understand that academics and real life were all a part of their education. Each of these men was not only kind enough to forge relationships with my children but helped me dip my feet back into the teaching arena. They too had worked private sector before becoming teachers and truly embraced many of the same philosophical views of engaging young minds as I believed. Working side by side with these men continues to be a pleasure, and the friendship we forged could not be any stronger. I side track a bit, in order to better provide a context to the impact of two particular life changing situations, which have opened up a cavernous hole and broken our hearts.
March 10, 2015 began like any other school day. Arriving and setting up my room, making the rounds to visit with my fellow brotherly duo, and continuing on ready for whatever the day might bring. Several periods down and an SOS message came to my texts from a fellow colleague who also plays in the shenanigans game the brothers’ and I engage in. Her words still chill me to the core.
SOS – Fo had to leave, home emergency. Fr on his tail. We need to cover classes but something is very wrong
Without any further information we began the take over their students. Every member of our staff covered their classes. Before long an answer arrived. A very grave and unraveling answer. Our matriarch of the staff sent a few of us close to the situation the grim and saddening news:
Pray – Fo needs us, little Forrest found at home in the garage. Fo needs us to be strong. I’ll keep you all posted.
Before the day ended our fearless leader, also a close friend to the situation, lead us into a staff meeting, with the chilling news, one of ours had fallen. We all sat stunned, the surreal minutes passing by, the still in the room leaving us all stiff and immobile. As a staff we shed tears, and found a strength in our matriarch, who became the voice between us and our brotherly duo as we awaited instructions on what the family needed.
Obviously, the moment a crisis hits, everyone is around to help. But in the weeks and months to follow often people fall to the way side and those still hurting are left alone. Fo is the father of four beautiful children who grew up in a home filled with love and care. His children are his world. But his oldest son’s demons were a force he could not help his son overcome. Fo provided the loving, nurturing home, provided the psychological help for his son, provided everything he could, and still young Forrest, unable to shake the darkness which loomed over him made a decision which forever changed his path.
As the Werner family mourned and gathered themselves from the unexplainable sadness of the loss, they rallied together, and three remaining siblings made a pact to keep up constant communication with one another. They never wanted another heart wrenching tragedy to strike them. Fo and I spoke often as the months passed by and the difficulties and pain of birthday’s and holidays were another constant reminder that his family was down a man. Our little shenanigans group was only one of multiple outlets Fo had to help him manage the difficulties and pain of losing one’s child.
In September the brothers lost their father who had been in failing health and at 86 had lived a blessed life. For many reasons they waited until May to accompany his ashes back to Indiana for a celebration of life. The boys made plans to travel the mid-west and enjoy a few extra days with some friends. Of course they were kind enough to send funny pictures and little tales of their trip to our shenanigans group, now dubbed “Politically Incorrect Group” or PIGs for our own humor! I knew they were due back in a few days and had sent off my last vulgar message of the night while they were visiting Tennessee. Somewhere around 5am my phone buzzed on my side table. Figuring it was my eldest boy at college needing a paper read before class I picked up the phone ready to lam-blast him about his college planning skills and my work life. The message I received still sends shivers down my spine.
Fr: Fo and I on the ground in LA. Headed to Santa Barb Hospital, Hayden attempted to take his life. In ICU. Keep you posted.
Poking the Mr. with tears in my eyes, hands shaking, and voice nonexistent, we sat clearly shaken for what our friend was about to encounter. Over the course of several days’ test were run, and prayers rolled in, but unfortunately the toll on Hayden’s brain was too much and decisions were made to remove life support. Once again my dear friend and his family were braced to say good-bye and plan another service for a young life gone too soon.
Fo and his family had no warning that Hayden was falling into his own dark place. His cousin had received a voice message a week or so before Hayden headed off to join his brother. The message was upbeat. He discussed the really good things going on his life, and ended the call with, “I’m just living it! Call me.” There were no signs he was struggling. There were no signs he was unhappy. There were no signs the young college sophomore was battling the deepest of inner demons.
Two boys, fourteen months apart, and a family left behind. Fo is a strong man, but this has rocked his world to the core. His family dynamics have changed dramatically over the course of three years. He and his wife grew apart before either boy made their decisions, and he is coping with a set of losses no parent should experience. Our little group keeps in touch daily and we are all in it together. We are open and honest which is a beautiful relationship but the struggle is real and the devastation still present.
Suicide is growing in epic proportions within our modern-day society. According to the National Alliance on Mental Illness, suicide wears many faces, but there are some chilling statistics:
Suicide is a major public health issue, taking life without regard to age, income, education, social standing, race, or gender.
Overall, suicide is the 10th leading cause of death for all Americans, the 2nd leading cause of death for adults ages 25-34, and the 3rd leading cause of death for youth ages 15-24.
The legacy of suicide continues long after the death, impacting bereaved loved ones and communities.
September is National Suicide Prevention month and awareness is the key to prevention. Fo and I discussed writing this piece and it has been really difficult. Fo was not a tattoo bearing man before eighteen months ago. He now wears the legacy of his family on his chest and openly discusses the need for more research and services dedicated to helping prevent such unexplainable tragedies. Donations to the national suicide networks are always appreciated and well received. Donations in the name of young Forrest and Hayden Werner have been set up through a local chapter of the National Alliance on Mental Illness, Orange County. The family also set up donations in Hayden’s name with the With Hope Foundation.
As good friends, our PIG group continues providing fun and off-color humor for both brothers. Additionally, Fo and I have begun a little reading therapy. I’ve helped set up his iPad with the Kindle app, and he has read my blog and reviews, selecting pieces which interest him. The smiles on his face as he came to discuss Sloane Howell’s The Matriarch were a welcome surprise. Discussions about the twisted society in Celia Aaron’s Acquisition Series, and he is now enthralled with Leigh Shen’s Blood to Dust. I can’t wait to see what he chooses after this! We are truly enjoying this new outlet for his mind, and he is “Living it” as advised by the last words spoken in a voicemail by his youngest son.
Suicide is a serious matter and it can strike without warning anywhere, anytime, and anyone.
Twin Towers, outside/inside the viewing platform, Yankee Stadium circa 1989
In my lifetime, I’ve witnessed some major shifts which changed the cultural attitudes and social structures of the world we live in today. In my lifetime, I’ve played my part remaining positive and influential to my best ability, as events unfolded and remodeled the world. In my lifetime, no singular event changed the world as drastically as those which occurred eighteen years as ago today. In my lifetime, no event stopped a nation and crippled the world as heavily as those events which took place on the morning of September 11, 2001. In my lifetime, a blip appears each year as it is one of the few major events which is marked by everyone, ten years and older at the time, knowing exactly where they were when they heard the news.
Prior to 9/11, several events in my personal timeline occurred, which caused me to take a few steps back and reflect on the change connected with those situations. My first true memory of a lifetime changing event came when I was seven and the transformation of CG into films, as Star Wars hit the market. For a seven-year-old this was big; world scale it changed the way cinematography processed scenery and developed transparent worlds and characters.
The next big lifetime change was the 1980 Soviet invasion of Afghanistan, leading to the boycott of the Olympic games, as well the Iran hostage situation. The news became a daily reminder of how diplomacy had broken down on the international stage.
Nothing major affected my own selfish teenage world until the Space Shuttle catastrophe in 1986. I was sitting in my history class when the announcement was made. It still sends shivers up my spine, as once again the news media focused on the situation.
In 1989, while my college roommates were in Salzburg, Germany, they took part in the Berlin Wall takedown. Again, the news media changed the face of this event.
The tensions building in the Persian Gulf changed my late teen, early twenties generation, into believing we, as Americans, held the power to make a change over controlling tyrants in other countries. Despite the fact, these countries had fought, and continue to fight, over land and religious rights. Each of the events from the end of the Cold War to the US involvement in the Persian Gulf were calculated in the ever-growing news media market and changed the world.
In 1992, my own world witnessed its first impacting change as the Los Angeles riots broke loose. I was teaching school; my first real job, when the riots began. I was 30 miles outside of Los Angeles teaching in a predominantly African-American school. My students arrived the day after the rioting commenced and stood up to let me know I had no grounds to be their teacher, because I was blonde and white. I will never forget the fear and quiver of the young lady who stood and spoke for the 42 students in my room. The impact I made, showing my students how to research issues to find truths, will forever be burned in my mind. It was the first time I believed, down to my core, knowledge is power.
Several events reared their ugly head from time to time over the course of the next ten years, the biggest was the birth of the internet and the global impact. It transformed the entire planet into a network of easily accessible information and gave birth to a world dependent on the power of computers and intelligent communications.
Prior life-changing events had turned the heads of many, but life went on as usual. No real long-lasting impacts which modified world behaviors or drastically turned the heads of the world soliciting long-term change. Not until the morning of 9/11.
I was four weeks away from delivering the youngest member of our clan. Our eldest son, three days into starting kindergarten, middle son a few days into preschool. Tossing and turning all night, I’d left my husband to slide into our guest bedroom hoping at least one of us could sleep well. I’d fallen asleep around 5am, only to be jolted out of bed around 5:50am.
“Honey get up, a plane crashed into one of the World Trade Towers,” the shake in my husband’s voice loomed eerily. I knew by his tone I needed to see what was happening. Sitting on our bed was our oldest, bright-eyed telling me the building was on fire and pointing at the screen. Our confusion when the second plane crashed, live feed, right in front of our eyes, sent shock waves through my body. At first, I wanted to believe it was a replay of the first hit, but that was not the case. Startled out of our astonished state by the phone, I moved slowly to answer.
“Turn on the news,” My mother’s voice commanded through the receiver.
“We are watching; I can’t believe this.” I shook as I spoke. My four-year-old kept his eyes glued to the horror unraveling on the TV.
“I’m going to make some calls, but you’d better check to see if the schools are open. Oh, my God did you see that, it’s the Pentagon,” My mom shouted into the phone. I could hear my dad mumbling in the background.
“I’ll call you back.” Tears started falling as the impact of what I was witnessing crashed over me. For the first time in my life, the true impact of terror ripped through my core. We had friends who lived in New York and Washington, relative’s in multiple eastern and mid-western states. My mother-in-law was out-of-town in Colorado Springs at a medical conference. Then it hit me, we had good friends who worked in the towers. They should be at work; holy hell they could be trapped.
The first hour of information numbed me. My husband stepped carefully around me, as he was truly afraid I’d go into early labor. I tried my best to pull myself together but then the phone calls began. Friends and family worked on checking in on one another. My mother-in-law ended up stuck in Colorado for a week with flights grounded and transportation routes shut down. My parents were due to fly out for a European vacation in the 13th; the trip was canceled immediately.
For the first time in world history, the entire world shut down for days on end. For the first time in history, a crisis unfolded which impacted the world and changed the face of our enemies. For the first time in history, true terrorism reared its ugly face on a global forum, which remains scarred and broken. For the first time in history, our enemies were not those of identified governing bodies, but they were linked to those who lived among regular populations and gathered intel by using the globally accessible internet; they share information for evil rather than good. For the first time in history, our enemies could not be singularly identified, because terrorism, in its purest form, is intended to shock the masses and stun the bystanders. One singular day, four separate attempts, and the world was shaken to its core. A world which changed the way it operates because terror ruled its wicked ways. A world which still suffers the consequences of those who choose to behave in a radical selfish manner with no clear purpose toward making the world a better place.
We did witness over the course of minutes, hours, days, and months after the attacks, a sense of humanity breathing back a life of sympathy and empathy for others. People rushed forth to help the wounded and to comfort those who were left behind. Professional sports resumed and provided a common ground with which people could begin to heal. A resurgence of national pride and international relations began evolving. While we changed certain practices for transportation and safety, we began rebuilding not only a nation but a world.
We all have our 9/11 moment. We all have our 9/11 recovery. We all share in the shock, tears, and restructuring of some foundational beliefs. No single event in my lifetime rocked the world quiet as deeply as 9/11. Eighteen years later, I’m still in disbelief that mankind can be so ruthless to one another. Eighteen years later, I’m hoping we can come together to learn and grow beyond the surface and search for peace. Eighteen years later, I am not willing to forget the lives lost, the struggles, the hard-working individuals who work each and every day to preserve our freedoms. Eighteen years later, I am still proud to call myself an American and contribute, to my best ability, to a nation through honoring those who serve, those who give, and those who seek to find solutions towards ending a cycle of terrorism and fear.
For today, I send my prayers to those who still suffer the worst impacts of the lost loved ones. I send prayers to those who still voluntarily fight for our freedoms, and I send prayers for those who are yet to find themselves as a part of the greater good. In my lifetime, I pray we find peace; since my vision for my children revolves around them making their dreams come true. Global prosperity and happiness are a must not a hope in this formula.
Chez peanut was a tradition we began in my family when the kids were young. One Father’s day we couldn’t figure out what to get my dad. He has everything he ever wanted, and he’s traveled the world multiple times over. At the time my twin niece and nephew were eight, mine ranged from six months to five and half, and the kids were full of energy. We had a long-standing tradition of something we called Fat Sunday. This tradition dated back to the days when my mom was little and her grandfather, a world-renowned Methodist minister, would have the family over after Sunday services. She and her cousins would have to perform before the meal was served. My parents continued the tradition and we would get together for a big meal, swimming, and bonding time. By a stroke of genius, we decided it was time the kids could help put together a once a year project, based on a country or culture my dad would choose, and they would perform on Labor Day weekend. And so the tradition of Chez Peanut was born.
For the first year my dad decided on the Pacific Islands, which gave birth to Chez Peanut Polynesia. Throughout the year the kids researched cultural traditions such as folktales, dances, major historical events, and foods and beverages related to the Polynesian Islands. They also began putting together costumes, drawings, and music pieces related to their research. We, the parents, experimented with traditional recipes and libations throughout the year selecting a menu to finally present during the big event over Labor Day weekend. Some of the foods were down right rancid while others made the cut. By Labor Day the kids had perfected their costumes, presentations, and helped each member of the five team crew reach their potential by age appropriate activities. For example, my nephew learned a song on the ukulele and my niece taught Little, who was almost two by performance day, how to do a version of the Hula dance. My boys attempted to mock a fire dance they watched a video and painted tribal tattoos on their bodies. My niece read a folktale and provided information on how the tale had grown through the culture. The kids also decided on decorations for bringing to life my parents backyard to truly gave them the authentic feel of a tropical paradise. My parents enjoyed it beyond words and the tradition was born.
Over the years the kids virtually visited and created Chez Peanut presentations for Mexico, Germany, Argentina, Italy, Ireland, and Jamaica. By the time seven years had passed the sports train took over and everyone struggled making Sunday dinners with baseball, softball, and volleyball tournaments happening. However, for the years it was in place the kids created some amazing keep sakes and memories which we cherish deeply, holding them close in our hearts.
It’s seven years since our final Chez Peanut, and oh my how life has changed. This Labor Day my nephew is busting hump putting the finishing touches on a restaurant he is helping open. My niece is actually home for the first time in four years as she hung up her softball cleats and graduated from college. She’s working on her next chapter and I couldn’t be more proud. My eldest is at college and meeting his girlfriend’s father. Her father lives out of state and they have dated for a year. I reminded he might want to be charming! My middle just left for school a week ago. He’s adjusting and we are hearing from him quite a bit. I miss him dearly, but know this is where his wings need to spread. The little is here with us. She has her own jam-packed schedule, but is trying it convince us the boy who asked her on a bowling date is only a friend. I’m trying hard to explain boys who are almost sixteen don’t ask girls places as friends like kindergarten boys do. She’s giving me the stink eye. The Mr. and I are not ready for this dating thing with her. All in all, our lives are good and we count our blessings each and every day. Hopefully your Labor Day weekend is filled with many happy memories, and you take the time to count your blessings as well! My best to everybody this holiday weekend!
Several weeks ago “When in the Trenches” was posted the little and I had just come back from another blood draw and glance over her chart with not much muttered from the specialist. My little is just a data collector’s nightmare at this point. However, yesterday a little light burned brightly for a moment on her situation.
So let me back up a minute to make this little whirl wind situation make sense…
Back in April, Middle had a strange thing happen while pitching. His index finger turned purple and looked frostbitten (pictured above). Of course, this created a little alarm, but I figured he broke it and shrugged it off as another thing I’d need to handle in our ever busy daily lives.
Sometimes I write off mother of the year by mid New Year’s day, this year I waited until April!
After our general practitioner (GP) examined his finger, several days later, he ordered us straight to the ER for an ultra sound of his arm looking for clots and blockages because his finger was not broken. Now the concern in the back of my mind heightened a bit. We sat in the ER for six hours while they ran several tests. Fortunately, nothing was blocked but they moved us along to a vascular surgeon.
Which, for those of you with tween kids (those between childhood and adulthood) it is damn right near impossible to find specialists who deal with kids ages 12 to 19. A few reasons exist for this weird little window of time:
The majority of health issues happen in the younger years or the older years.
Traditionally kids in the 12 – 19-year-old age group are the healthiest human beings on earth, so there is no good reason to study them.
If few specimens exist to study nobody is willing to pay research costs for only a few souls.
Structurally these kids are still growing, but not at the rates of 0 – 12. They are also not finished, so their bodies do not behave like those of the 20 + crowd when medical treatment occurs. This leaves these kids in a black hole.
Unfortunately, this leaves families of those age group kids at a disadvantage when looking for specialists who deal with issues beyond the typical situation. There is very little research done on this age group when situations arrive because few patients exist making beat groups difficult to assemble and follow. This has been the underlying problem with Little’s Knee as well.
After begging the CHOC hotline for a teenage vascular specialist, a doctor was suggested and more testing happened with his on and off again purple finger. At some point during a conversation with the MIL, she announced that she and her sister were diagnosed in their 20’s with Raynaud’s Disease which causes a swelling and vascular shut down to appendages. Fueled with this bit of information the vascular surgeon ran a few marker tests and things came up negative. However, without some deeper genetic testing he could not rule out that the mysterious finger was not due to some small interruption in the generic code of the Middle. Fueled with relief he wouldn’t lose his arm or stroke out from a clot life moved on as usual.
Yesterday, kids’ annual check-ups, and get the Epi-pens renewed and paperwork signed for entrance to school, were on the list of things to do. Everything was fairly typical until our GP, who has been their primary care taker since birth and my doctor since I was 18, asked Little about her knee.
“So, does the knee still bother you? I see Dr. X sent another set of test off in early August.” He’ s writing notes and glancing up from his roll about stool.
In her typical I’ve-given-up-caring-about-me-knee-voice, “Well, it hurts all the time with severe throbbing about every few weeks now instead of daily. I just move on because nothing can be done. I’m not letting it stop me from activity if that is what you’re asking.” She smiles and he laughs a little at her teenage attitude (he is the father of six so he understands attitude).
“By the way what do Autoinflammatory and Autoimmune mean?” She asks with an innocence about her. I was a little shocked by her question. It’s been three years since this all began.
Who knew she didn’t really understand the terms?
He goes on to say, “It means doctors really don’t know shit and cannot determine why your body is acting out against itself and we need to investigate more.” Our GP has his family practice, but he is also one of the leading trauma ER doctors on the West Coast and also teaches courses at one of our local colleges. He has a dry sense of humor and he says things like they are, with no filter!
Moving forward he begins his examination of the Middle, talks college with him, then asks about the finger, as he again glances at some paperwork he’s been sharing with the ER and vascular surgeon over the case. Once the Middle mentions the word Raynaud’s Disease the bells lights and whistles go off on the doctor’s face.
Verbal diarrhea begins flowing faster from his mouth than I can intake. His medical jargon and ADD thought spewing has my head spinning. Once he finishes jotting notes and medically connecting some dots he lays out everything in layman’s terms, kind of…
He wants to send a new set of blood and genetic marker tests over to the case study on Little. Raynaud’s is classified as an Autoimmune disease with restrictive properties which are caused by swelling – inflammation. If Little has traces of Raynaud’s in her genetic code it may have manifested in a different way, because I do not have it and neither does the Mr., but Mr. must carry a recessive in his code somewhere. If this is true, she may have a mild case of one of the Autoinflammatories associated with, bring on bad mother of the year because he rattled off multiple letters of several different strains, which are only partial genetic code breaks. She is most likely only partially genetically tainted because my momma gene codes do not carry any markers. This would also account for the strange lymph nodes on the back side of her knee. Which could also be exaggerated due to the six years of bee immunization therapy as well. Injecting a known allergen into the system also has side effects, and he is now wondering if this is all related to her system attacking itself.
Who knew one little mention could lead to a whole new set of doors opening?
Again, I’ve sought out scholarly articles, because I love tormenting myself, about the possible little strains of what she may be dealing with. But what I found so far is she will never be rid of the pain, and not much can be done for her. She will need to learn to control the pain, and the hope is it does not manifest itself into something bigger over time. Of course, developing this little anomaly so late not much research exists on people her age. Most diagnosis is picked up in the first few years of life. So again, strange little development which puts her in a class of her own.
She’s been a trooper through this whole situation. Now every flare up, every ice pack, every swelling she bears down and works through it. Sometimes she has tears, sometimes she grinds her teeth shuttering to gain control, and sometimes she throws caution to the wind, but in the end she shows a strength I cannot begin describing. She really is my little hero with a spirit that shines brightly each and every day.
Please remember August is Autoinflammatory Awareness month, and if the funds are available to donate they are incredibly welcomed. Research and help for families cannot happen without funding autoinflammatory.org
The Mr. wanted a football team, I wanted two. These discussions began on our honeymoon, I held him off, but kids were his biggest wish. Not that I didn’t want them, but we were relatively young, none of our friends were married, and we’d just started our lives together.
The first was born two and half years into our union. By the time he hit fourteen months, our cute baby seemed like such a big boy. Slowly, discussions began seeping into dinner chats, bedtime talks, and first of the morning conversations. We battled with the proper time for thinking about adding to the roster. We’d only been in negotiations two months when I began feeling a little under the weather. The all too familiar 24-hour flu and overly tired feeling settled in. Our eldest, sixteen months old now, fidgeted in and out of the bathroom, while I waited for the two lines to show me the answer I already knew. Once again, Mr.’s idea of discussion became reality, with me still slowly dragging my feet. The lines turned pink, the Mr. smiled, pleased with the outcome, and here we were back on the pregnancy train again.
Veteran’s day turned into a day ever burned into our calendars, as we celebrate the heroic deeds of those who gave to our country, and the birth of our second child. Now known as the middle child. While he was no tiny little tike, at twenty-three inches and ten pounds six ounces, he was longer and lighter than our first. His chipmunk cheeks had my heart from the moment he arrived. He spent the night in the NICU. He still had amniotic fluid in his lungs, since he made a quick dramatic entrance, with only three pushes and a great catch on the other end by the doctor! That night I looked around the NICU feeling terrible. My little hulk was healthy, although under observation, and his counterparts were so tiny and frail. Looking back, the foreshadowing of events over the next year would change my perspective.
Middle quickly developed a strange stuffy nose once solids were introduced. He’d only been fed breastmilk, and did fine with the mother’s nectar. The doctors figured he had a cold spread from his brother, who was attending preschool a few days a week. He loved the taste of Benadryl and Tylenol, so we let the doctors keep tabs on him, and went about our business. Here is another time I wish I had a better vantage point, and more knowledge upstairs, because I could have saved us some pain and heartache.
By nine months, like his big brother he was up and moving. His first birthday celebrated without a hitch. We felt pretty successful surviving the year with potty-training a two-year-old and dealing with the sleep deprivation of a newborn. The Mr. had put the football team breeding plan in a holding pattern, as we navigated through this year as a man to man defense. Two weeks after his birthday, middle developed a fever of 105. It was steady for eight days. We spent all our time between the doctor’s office, emergency room, and basement labs having our poor boy jabbed and tested. We kept him in ice baths, and rocked him for hours on end. They never could pinpoint the reason for the high fever, but when he came out the other side he stopped walking and talking. Our happy baby was now in a muffled world of his own. He played quietly and rarely made a peep. By New Year’s, the deep sinking feeling of knowing something wrong lay underneath finally got the best of me. I took him back to our regular physician, who quickly determined he had clear fluid behind his ears. Most likely the left over sign from the mysterious fever. The doctor sent us immediately over to an ear, nose, and throat (ENT) specialist. He too observed the fluid and determined that Middle’s equilibrium directly correlated with the trapped fluid. All of this resulted in Middle’s inability walking and contributed to the little vomiting trick developed over the course of the illness. Vertigo in a one-year-old isn’t pretty. Whenever he moved his head in certain directions, or bent over too quickly, he promptly lost his cookies. His eight-pound weight loss by this point became a huge concern since he weighed twenty-four pounds at his year checkup. The ENT suggested tubes for draining the fluid and restoring his equilibrium. We signed all documents and went home praying the surgery date would be soon.
The devil who sits behind a desk and punches in codes, which do not equate to people and compassion, called us within forty-eight hours and denied services. This devil never once looked at the boy’s files, never once read the urgency with which critical mass was nearing, and simply refused coverage for the surgery because the Middle had not suffered chronic ear infections. If he had, then surgery would easily be approved. My momma lion went into full gear. I became the queen of letter writing and advocacy for slaying the Lucifer’s in control of the approval processes for necessary surgeries. After six months of hounding the evil insurance hell, they finally approved the operation. Within twenty-four hours we had a brand new baby.
Lagging behind his peers developmentally, the Middle spent about six months playing catch up. He developed quite a photographic memory with his visual world heightened, while the auditory waned. He became a master at observing others and committing to memory how things worked. With this little talent he hung in the shadows of video games, board games, and other kiddie friendly activities memorizing the successes before he actually threw his hat in the ring. People would give us very sad looks, as if we were raising a child with a max IQ of fifty and the potential of maybe a street sweeper if we were lucky. This trick he had up his sleeve paid out overtime, and the nah sayers eventually stuffed their sad looks and degrading comments back in their over active mouths.
One hurdle down and another crept in without warning. We limited his diet because of the sporadic vomiting trick, and I kept pumping an assembly line of milk. Too much change made Middle’s world too difficult, and we were still wrapping our heads around if he would actually turn a corner once surgery happened. Luckily within twenty-four hours he was walking and talking and making up for lost time.
Then the flaming red hives entered the picture. As we introduced foods and set him up for tackling the world, he randomly developed hives. He’d play in the grass, walk through the park, eat certain foods, or drink real milk and everything turned red, including the whites of his eyes. Back to the doctor we went. Good news, he had allergies. Bad news, he was allergic to more than he was not. Another medical plan made and here we were with bubble boy. He began an allergy regiment which cleared up all those watery eyes and runny noses he had early in life. Although he will always carry an epi-pen and take Benadryl, discovering the root of many issues was a huge relief. If he had only come with a manual we would have realized the bigger issue.
Bring on school. Through a series of tests, and other situations, he was ready to tackle public school. Although on the young side, he still made the cut off date of December second. With the birth of child number three we were strapped for cash, and he needed to leave the comforts of the nest. His smile sunk into those chipmunk cheeks deeply, when he realized he’d be going to big boy school with his big brother. He met friends who voluntarily sat at the nut free allergy table, his buddies asked him over for play dates, and everything finally seemed on the up and up. Until the first parent teacher conference.
He brought home the typical papers from class: stories, drawings, scissor skills, alphabet, and number practices. Which all looked up to snuff in my eyes. I really thought I’d be going for a simple ‘Your child is lovely, nothing askew, thanks for your time’ kind of meeting. He sat outside and played on the gym equipment, while I seated myself in the appropriate little chair across from the teacher. She presented a glowing report of his behavior, his willingness for helping others, and commented on how precise he was with his fine motor skills. Something in the lovely teacher’s voice however alerted my senses as I waited for the but…
“Middle is doing great. We love him in class. We were a little concerned with his age, but he really is quite mature.” Her pause kept raising the hairs on my neck as I sat observing Middle’s mad monkey bar skills through the window.
“Mrs. K and I do share a little concern.” There it was the bomb ready to explode. “We have a pretest for reading, writing, and math skills all children are taking. Middle refuses to take the exam. We’ve tried several times over the course of a month, and each time he gives us the same answer, ‘I’m sorry, I can’t do that. I haven’t learned how to yet.’” Listening to her words broke my heart. I worried the Mr. and I, with our untimely third baby, rushed the Middle into something he wasn’t ready for. This is the problem with popping three kids out in five years and being young without a plethora of finances behind us.
Keeping my voice steady, “Is he too young to be here? Do we need to find him some extra help? He did…” Her hand reached over to grab mine and with a smile she backed me down off the ledge.
“Quite the opposite, we feel he’s gifted, and want permission for testing. This will allow us to provide extra services for him. He is smart enough to know he’ll fail, and he knows the skills need time for development. We don’t see kids like him often who also have the social skills, athletic skills, and compassion like your Middle.” She smiled from ear to ear like she’d uncovered a pot of gold. I was already a retired teacher, working a private sector job allowing me to work and raise the kids. I understood what she suggested. But I certainly did not see my son in those same eyes. The little boy who hopped up crisscross apple sauce on the toilet with his toothbrush to save time in the bathroom, or drew green pen on his little sister, because she looked like a nice canvas certainly did not indicate the workings of a genius in my book.
I thanked her, but knew Middle would never pass the exam. The exam before third grade is all auditory. Middle is a visual learner. Deliberately setting him up to fail certainly never entered my mind. We pushed off testing every year until third grade. He registered off the charts. The only bonus for him taking the test lead to ample opportunities for enrichment activities. The Mr. and I felt if his brain power was strong he’d succeed no matter where he was placed. We believe so much more goes into the pie of making a whole human being grow to a responsible adult, and Middle needed time to fill the areas of his pie.
Middle became an avid reader at an early age. He loved all books, all heroes and heroines, all genres, but his life changed between third and fourth grade. When J.R.R Tolkien entered his room one night and told the tales of The Hobbit and The Lord of the Rings. He reads these almost every other summer, filling space with the movies, revealing in the world Tolkien wrote so many years ago. I knew when he read them, and understood Tolkien at that age of eight, we might be in trouble!
Over all he never once laid down and blamed his allergies or troubles on any of his early health issues. He still favors visual learning cues better than auditory ones. Of our three offspring he is hands down the most compassionate and caring. His mind is a wonder to all of us. While his siblings also passed the GATE exam and are no slouches, Middle provides me with a question mark on the universe. He validates some people come pre-programmed with knowledge well beyond simple mortal understanding. We did do our job. We exposed him to multiple new activities such as travel, football, soccer, and baseball, Model United Nations, volunteering and community service. The Mr. and I did our best making him the best he could become. Now the time closes in on his departure from the nest, and onto a larger playing field from that of the kindergarten drop off.
My mind is racing around wondering how my little boy grew from the chipmunk cheeked cherub to the whisker covered gentle giant? When did he become mature enough to manage his own health issues? Will he be safe away from our cocoon loving home? I have a week to wrestle with these questions and prepare him for a world outside our nest. College, while still a safety net, is the jumping off point. I know we’ve been doing this for two years with Eldest, but his situation was different. After seventeen years of hard work, our job now is to watch him stretch his wings, guide him when he hits rough patches, and encourage him to fly on his own.
From the time children are born, they have a built-in fan base between parents, grandparents, siblings, and other relatives. These fans help guide, encourage, and motivate children for future adventures. This idea of finding a fan base hit me like a bolt of lightning in the middle of the night, and I’ve mulled it around in my mind for hours now. As adults where do we gather our fan base and share our biggest goals?
The photo above is the screen shot I took from the national small college rugby championship feed. We could only afford for one parent to fly to Pennsylvania; I sent the Mr. first class for the experience of a life time. Eldest hung up his baseball cleats, after twelve years of playing, and slipped into new spikes his freshman year of college. His confidence in his ability to play a new sport and succeed blew my mind. Through hours of hard work studying plays, watching film, and stepping out on the practice field multiple times a week he earned a starting spot on the team. Luck would have it the stars aligned and his team went on winning the small college national championship that year. Last year they made regionals, but too many injuries plagued their team. I’ve asked the eldest what made him switch from baseball to rugby since he’s still a die-hard lover of the diamond. His response surprised me a little. He said, “You and Dad always support me to go for my dreams without limitations. I know baseball will always be around, and I can play softball well into my golden years. But the opportunity for me to try to new things is dwindling. As I get closer to ending my academic career and embark on my next chapters this is the time for change. Rugby is a way for me to learn something new, keep active, and be a part of a team.” He’s also joined a build and design team for F3 racing cars. They are a group of engineers from several disciplines who create and test new aerodynamic designs, electronic systems, and hybrid fuel sources. He still attributes his willingness for joining different groups or trying something new directly with our continued encouragement and support.
For years in education, the idea of an authentic audience for young and emerging writers has been a buzz phrase. Educational companies put forth several media outlets safe for kids to upload and share pieces they have created. I’ve always shied away from public social media outlets because my students’ ages leave me uncomfortable with the mass public scrutiny. However, application programs such as Edmodo, Kidblog, Google Classroom, and Haiku have opened up a way to share work and responses in a controlled environment. I often suggest to kids who are avid writers to set up a Wattpad account if they want to dip their feet into a little more public forum where they can receive feedback under their own pen name or handle.
My own writing and ideas were kept from public scrutiny for years. Of course, I wrote scripts for short thirty to sixty-second commercials, but directors, actors, graphics, and post production editors took those scripts and made them so much more than the written words themselves; I never considered this a public forum of my own work. Over the last two years, I’ve stretched and grown as a writer exploring different avenues for sharing my creations. Some have failed miserably while others have grown roots and become more than I ever dreamed.
My Master’s thesis was published in an educational journal and a few big names in education have reached out and opened up lines of communication. The National Writing Project opened the door for me to lose a little more of my introverted personality and share the fictional works (and some nonfictional pieces) with a new authentic audience. However, the biggest eye-opener, as a writer, is the openness of the Indie writing community. These authors and readers share a bond and fan base like nothing I’ve seen before. When authors need support for a cause near and dear to their hearts, their fans do all they can to spread the word, donate, or volunteer something which fills the need. They promote one each other’s works, write reviews, and provide sounding boards on multiple forums. These grassroots style promotions created a new branch of authorship which has changed the back bone of publishing. The strength iof the relationships being built is a direct sign of the times correlating with the 21st century technology advancements.
As I dip my feet further into this world, I’m constantly admiring the depth with which each facet of the process opens new doors. While my family still holds me up and cheers me on each and every day, this new community of friends and colleagues still blows my mind away. Quite simply, the connection for success is still directly attributable to the family, friends, and fans who continue to encourage and motivate you through both the thick and thin times. I’m only embarking on my journey, shoot I haven’t even left the dock yet, but the incredible reception and wealth of shared information compares to nothing I’ve experienced before. As everyone settles into their daily routines I ask you who’s your biggest fan?
My Mr. and I have been together since 1990. We actually met in the fall of 1989. Me, the big college sophomore with plans to complete my degree and student teaching in three and half years, because why waste time. (I did accomplish this goal; I was always nerdy) The Mr., a big defensive nose tackle with a stellar freshman plan: play football, tear up the gridiron, be the best, end of story. Academics only existed as a minor speed bump to achieving what he wanted. We met through my roommate, who was assigned as his guide through academic and campus life, and making sure he kept out of trouble. We were both eighteen, and our worlds couldn’t appear more polar opposite.
Looking back, our beginning would have ended up on the nightly news as a college stalking report. We met before email, cell phones, and the internet. The library in the college was an actual place for studying, typing papers (yes, very few word processors existed at the time), and searching endlessly through the card catalog for research materials (hopefully they were located on our own college campus) occupying quite a bit of the academic student’s life. Our worlds collided because the stars aligned just right, and included things like the library, resourcefulness, and determination.
He soon began stopping by my classes when they would end. All in hopes of getting a single date. He’d offer to carry my books, take me to lunch, study in the library. I always refused, sent him packing, and complained bitterly to my roommates about the “Dumb Jock” following me around. He then began lurking in my residence hall, coming by my room, asking for help or other various ingenious calculated plans for striking up a conversation. Again, I deferred him to my roommate, who was assigned the task of helping him. This kept up for months: the same bantering, the same stalking, the same refusing. (I always wondered how he knew where I’d be since we didn’t have the technology; to this day, he tells me it is his only secret.)
I finally stopped one day as he trailed me to class, and became the mean girl. I explained that under no uncertain terms would this baseball-loving, dedicated student ever date a football player, who by the looks of him would fail out of college before the end of his freshman year. You would think this would stop the freight train cold. Oh no, not Mr. determined, it only stoked the coals for the fire, and built up the steam in his momentum.
After Thanksgiving break, I broke. I accepted a date. I figured it would be my last mean act. He’d give up. We went shopping for Christmas presents for my roommates. We met at a mutual location, and I kept my distance. His attentiveness and open mannerisms started growing on me. Before the shopping ended he asked me to dinner. I accepted, because the experience had not been as painful as I’d worked it up in my mind. Dinner was another trap; he had already set it up so I’d meet his dad. His dad cooked us dinner. His mom, a CCU/ICU cardiac RN, worked that evening, but his dad willingly played chef. Once again, The Mr. made his plan and executed it flawlessly. He manipulated the situation, which outwardly I fought against. Inwardly I thought, “Well played, maybe he isn’t as pea-brained as I’d thought.”
Before long, winter break crept in and I packed up ready for the drive home. The Mr. called and asked for my home number. His confidence over the phone shown as he unfolded his next little tactical move. He explained how he’d like to take me to the beach, sit and watch a beautiful sunset, hold my hand during dinner, and then see where things might land. He was a little smarmy for my outer-self, but the inner-girl slowly broke a little more. I laughed when he said he wrote the number on the weekly TV guide (yes, we dated in the days before channel guides were available, and remotes were still a luxury). I told him his mom would throw it away, so it was nice knowing him.
When he never called over break, I knew things had run their course. We were finished. Who writes a number on the weekly trash anyway, and this actually suited what my first impression about him was anyway. I wasn’t sure how he’d crept into my life anyhow, which only built my walls back up again and I refocused my mindset back on my goals.
January arrived, back in classes, volunteering in classrooms, and all study times penciled on the calendar, I focused on rocking the new year. A knock on the door changed everything. A sad Mr. waited on the other side; not the confident, cocky, six-foot three, two hundred eighty-pound lusting boy, but a broken soul. His grades mailed over vacation showed a less than stellar outcome. Football, his life’s breathe, needed him to up his game on the academic side. He also spent the break searching the trash for my number since his mom threw away the weekly guide when the new one arrived. I didn’t say “I told you so”, I actually sat down and helped him work on a better study plan. Before long we developed a friendship through hours of studying and learning little things about one another during those sessions. I learned very quickly he’d never worked as hard academically as he had athletically, and this was the basis of his struggle. He knew what his goal was with football all along. Nobody had ever asked him what his academic endgame looked like. I found this intriguing.
By mid-February, we were inseparable outside of classes and his off-season football schedule. He even got up early running with me catching the dawn or visiting the gym in the afternoons for a second work out. All this just to spend time with me. We experienced a few laughable dates; including one which involved running out of gas, a large cow patty riddled field, his roommate, Twinkies, and the cops. Another where a mixture of Malibu rum, cheap beer, a second story window, and poor innocent people below experienced a puke bath. But as the saying goes, “What happens in college, stays in college!”
We’d spent time with his parents, who lived close to campus. His mom still laughs about the Christmas she and his grandmother spent digging through the trash, because The Mr.’s future wife’s number had been thrown away. He told his parents way back in August, before speaking to me, he’d met the one. I did not know this until much later. Realistically, if I’d known, I’d have run fast and far, far away. Sometimes things need hidden for a while.
When spring break rolled around I invited him to meet my parents. This step truly solidified our relationship. My parents liked him. His eighteen-year-old self, held up through the line of questioning put forth by my parents, brother, and grandparents. He also earned brownie points, helping my dad with a few manly things around the house, and sweet talking my mom. I knew when they all liked him our relationship found its solid footing.
Second semester finals arrived in May, he began acting a little strange, taking me to the mall (I hate shopping) where his sister worked. He’d have us perusing jewelry stores and asking all kinds of what if questions:
“What if we were to live together, where would that be?”
“What if you were looking for a wedding ring, are you a big gem girl or a traditional band girl?”
“How young is too young to begin a family?”
I chalked all these questions, and odd mall trips, to his Ohio upbringing. He spoke about friends back east getting married right out of high school, so I questioned nothing about his inquiry. Then, he sold his car. The beloved camouflage Baja Bug, which ran out of gas on the freeway only a few months earlier. It wasn’t like he needed a vehicle on campus, but it was a project vehicle he enjoyed modifying. Again, my content nineteen-year-old self-trusted his words and if this made him happy, who was I to stop it.
I finished my last final a day before his. My roommates also finished, and we were ready for a little fun before leaving for summer. However, The Mr. had asked me over to his dorm before he began studying for his last final. I figured he needed a little ego boost since he’d been working his rear end off, raising his GPA. (He did raise his grades and graduated with an overall 3.3 GPA. Playing four seasons of football, landing him national athletic accolades, and finishing his degree in three and half years. Not bad considering his 1.9 GPA at the end of his first semester)
It didn’t take me long, when he dropped to his knee, voice shaking, ring on his pinky, and he began his spiel, to figure out his intentions. The innocent part of his personality grabbed my heart immediately as his words flowed. The Mr. kneeling, the bunk beds unmade, and a life-size inspirational poster of Howie Long overlooking us as he popped the question. With zero doubt in my mind, the yes gushed out and the ring slipped onto my finger. (I proudly wear that Baja Bug on my left ring finger each and every day!)
In the heat of August 2016, we embark on our twenty-seventh year of knowing one another. The ride continues each and every day. We still hate being away from one another. We both love our three children beyond words. We always work as a team.
He still does silly little things like kiss each one of my fingers in hopes it will inspire my creative process. He never leaves the house without saying “I love you”, and he supports me in everything I’ve ever dreamed of, while I, in turn, do the same for him. He is my best friend, my lover, my protector, my rock, and my everything, every day of the year and twice on Sunday’s (even if we are still a house divided between football and baseball!).
This poem was written last year as part of my National Writing Fellowship, it should hopefully make a little more sense after my long diatribe!
It’s a beautiful Sunday morning back in December of 2013. I’m psyched to be working on my final discussion boards for my second course of my Masters. The hubby knew I was stressed. He took all three kids away for a few hours, so I’d get a little peace and quiet, while I wrapped up my class. Sipping on my diet Dr. Pepper, selecting my iTunes playlist, I settle in getting down and dirty with my on line colleagues. I’m in my zone, when the silence is broken by the annoying ring of the house phone. I try to let it go. Something tells me I need to check the caller ID. My heart stops. The display flashes the orthopedists number. Our twelve-year-old had been complaining about severe knee pain for several months. Finally, after she complained loud enough, being third she really needs to scream loud to get attention, we sought medical attention. Now the phone display fills me with fear; only bad news from a doctor’s office arrives early on a Sunday morning. Lifting the phone, a weak, “Hello” squeaks out.
“Hello, is this the mother of the little? This is Doctor Cook from SCOS.” The pause is awkward; I don’t want to answer.
“Yes, this is she.” The lump in my throat builds.
“Good morning, I was going over test results this morning. Little’s case caught my attention. The good news, nothing is torn, and we only see a minor build up in her plica band. These are all good things we can easily fix to make her more comfortable.” I’m starting to feel relief. This is short lived.
“However,” that one word you never want to hear, “we do see a band of 5 to 7 lymph nodes behind her knee. This is not usual. Lymph nodes are not located in this area. I’ve gone ahead and sent her her files onto Children’s Hospital. They have an opening tomorrow, and I’d suggest you get her over there. It’s probably nothing, but with her age, and if she was mine, I’d get her there.” His voice trails off. I stand in the kitchen with tears swelling in my eyes. The message shouting in my head reminds me doctors don’t call on Sundays unless it is bad news.
I scramble for a pen and paper, start writing down all the information he rattles off, thank him for his diligence, hang-up, and let the tears flow. Of course I jump on the net and start researching. This is the worst idea. I find every terrible childhood disease possible. By the time Mr. S. arrives home, I’m a mess. He’s taken back when he sees my read swollen face and ushers the kids upstairs. Through sniffles, chokes, and gasps I spill the beans. We both sit stunned and he proceeds gluing me back together, reassuring me not to worry.
Before long we’re right back to massive testing. Nobody can give us any answers, but the next two months of testing are grueling. The little is a trooper though. She gets poked and prodded without a complaint or a tear shed. She just wants the pain to subside. Before long the medical community nails down four possibilities.
A rare form of cancer – not sure they’ve seen it before
Rheumatoid Arthritis (RA)
Autoinflammatory Disease – an offshoot from RA
Osgood-Schlatter Disease – most severe form
This really does not help. I continue researching, she’s still in pain, Mr. S. continues to be a rock. I try shoving down all the emotions, as my research leads me to places that are dark and disturbing.
After more than seven months of testing, the medical community is still stumped, her knee still hurts, and we are still left with researchers around the nation perusing her file. She’s been allowed back to physical activity, which helps her mental state. Finally, the doctors rule out cancer, but want her markers checked for the next several years. This does not reassure my shattered mental state. They dive in deeper into RA and Autoinflammatory Diseases, because each of these can also cause lymph nodes to randomly pop up when the body is trying to fight something off. They begin treating her knee with physical therapy because one set of doctors believes Osgood-Schlatter Disease, in its worst case scenario, is part of the key.
This has been an ongoing situation which still looms over us. The doctors are still searching and testing her. Her CHOC doctor is an RA specialist. She has turned much of her case over to an Autoinflammatory Disease research team, because they’ve never seen anything like this. When your child goes through something like this you feel isolated, sad, and alone.
A few months ago as I finished up my first book, and began digging deeper into how to go from creation to publication, I was fortunate enough to run across an author and his wife who deal with a young son who suffers the effects of one type of Autoinflammatory Disease. Sloane Howell and his wife opened my eyes to a group, autoinflammatory.org, who helps families dealing with children diagnosed and handling living with these types of issues. Not only does a disease cause physical issues it also takes loads of resources and finances to navigate through it all. Often times the financial burden is overwhelming. I’d researched the disease, reading through dry boring medical journals, but came up with nothing that helped with the emotional side of a diagnoses. The Howell’s shared information lead us to a whole new resource. The blessing of sharing resources can never be repaid properly when you’ve been running scared for a long time.
The bottom line of things I learned along the way, although our little is still an anomaly to the medical community, resources are available. The need for parents to share information is invaluable. There are so many supportive groups around families need to embrace them because the emotional road is too difficult to handle alone. Finally, resist the urge to fill your brain with internet searched diagnosis. Filling your head with needless information before diagnosis only results in a little ride to crazy town for a while! And the biggest lesson learned lean on your spouse or partner. Together you can both reach the highs and muddle through the lows. Sharing can be difficult, but when you’re in the trenches together nobody else can touch you.